Corrigan loves his Steve Songs DVD. When he hears the start-up music he stops whatever he is doing and gets in a position to shake his tushy. Um, even if it means naked tushy. He adores Steve so much that he is family. All of us refer to him as “Uncle Steve” and we find ourselves humming the tunes long after the DVD is over. If I could put that man in my pocket, well…that would be strange….but life would be easier if the pied-piper of PBS were available 24 hours a day. Speaking of 24hours a day. Why do we not have PBS Sprout in this area yet? 24 hours of great educational broadcasting? I contacted my cable provider to request Sprout and so can you!
http://www.sproutplease.com/sprout/sproutplease/ now, on to the updates….after the flasher baby.
*Corrigan has been eating very well. We are still feeding 3 feet in front of the television but it is eating and we will take it! At last week’s checkup they gave me back a few grams of protein to use for solid foods and he is having no problems drinking all of his formula and eating lots of bananas and sweet potatoes.
*Speaking of checkups…Corrigan spent a few hours at John’s Hopkins for a scheduled visit and everything looks fine. His ammonia was 67 and while I do not like the number to be sitting that high it does seem that the tough time they had drawing blood from his port might have contributed to a slightly higher-than-normal number.
* The port. Ugh. It was supposed to make things easier for Corrigan but the past, maybe, 5 times that he has needed to have it accessed, whether for emergency citru-sick events or well-visits, the port is not flowing well. Each time, it is taking 3-4 sticks to get blood moving and it is so frustrating to stand back and watch this struggle happen when everyone, and I mean EVERYONE, kept telling us how much easier this would make Corrigan’s life. To think that before the port, a sucessful blood draw that happened in 3-4 sticks would have been considered AWESOME…now, it feels rotten. For a few months it worked perfectly, one stick, every time. Now, due to the fact that it appears to be a “wiggly port” (not stitched well to his muscle wall) and the amount of fat on his chest, coupled with how he contorts his body when being restrained is causing problems. We now have to let all parties that are about to take blood know that there has to be a person on each shoulder and that each shoulder must be pressed flat to the bed in order to force his chest up and out and, hopefully, bring the port closer to the surface of the skin. As if it wasn’t torture enough for Corrigan to be restrained..he must now have someone on each shoulder, someone to keep his head turned to the side and someone to hold his legs. I cannot imagine how it must terrify him to see so many grown-ups above his head while scared and angered.
*Subsequently, diaper changes are a nightmare sometimes. I think that forcing him onto his back when he isnt ready triggers memories of blood draws and his instincts kick in. Holding his legs up with one hand while trying to wipe the butt of a 25lb, 7 ounces angry baby really sucks. Sometimes I just want to swat his butt and tell him, “NO!” but I think that causing him pain during a diaper change would just further prove to his little brain that big people are meanies that hold him down and hurt him. So I just grit my teeth, try and restrain him in the most gentle way possible but efficiently to get the job done and get him off of the table. Ain’t it fun?
*Corrigan is almost walking. Mark and I feel like he might take his first independent steps in the next few weeks. He is learning his ABC’s. especially fond of the letter “H” and just yesterday said “H.I.J” when we were singing the ABC’s to him and stopped at G. He climbs on everything and I am finding that I am clearning spaces 4foot or lower now. For a little shorty he sure has a long reach. He is curious about anything that has a button on it…the stereo doesn’t stand a chance and he has figured out how to use the knob to turn up the television and startle us to death.
*Connor spent a week with his cousins in Virginia and came home more tan than when he was here and looking more like a shaggy haired teenager. I am not sure if I mentioned that his last report card was, again, straight A’s and his final grades for each subject were straight A’s. Aside from one C at the start of the year he had A’s for the entire rest of the school year and we are so proud of how he managed to stay so focused on his school work when this year, with Corrigan, was so stressful and life had no real routine. He has learned to not utter the words, “I’m bored!” during this summer break even though I know he surely must be. “I’m bored” is an instant request for some chores so he stifles that thought and keeps busy with video games, jumps on his trampoline and an occasional friend over to spend the night. His cousins, from Florida, are in town and we hope to be able to spend most of next week with them. It will be nice to have other older kids around for Connor to play with. I know that hanging out with your one-year old brother isn’t the most exciting thing in the world but he really seems to enjoy Corrigan and is so protective of him.
* Mark and I are doing fine. This is the third week since Mark has been out of work and the stress levels are increasing but we are keeping busy organizing and cleaning and spending time with the kids. It’s easy to slide into a slight depression and lose yourself online or sleep longer than usual but thankfully this unemployment has happened in the summertime when we can at least get outside in the backyard or take a walk somewhere outdoors. Neither of our cars are working well, our main vehicle is overheating even after taking it to two different mechanics, so we really are limited to our home and yard. This Friday would have been where we would have expected our next normal paycheck so I have not allowed myself to freak out just yet but I am aware that most families reach financial “crisis” after two missed paychecks. We are just like many other Americans that are cutting costs, slashing non-necessities and praying that money will rain down from the sky in about three hours. Two hours would be even better!
That is all for now. Thank you for all of your thoughts, prayers and emails of concern for Corrigan’s eating issues! This “world wide web” thing has really made the world feel much smaller. Who knows, maybe the internet might catch on after all! (wink)